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About the Pancreatic Cancer Action Network
Pancreatic Cancer Action Network
, Advance Research. Support Patients. Create Hope.
Pancreatic Cancer Action Network
May 01, 2009
Health & Medicine
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Transcript of "About the Pancreatic Cancer Action Network"
1. About the Pancreatic Cancer Action Network Anitra Engebretson Director of Patient and Liaison Services (PALS) ADVANCE RESEARCH. SUPPORT PATIENTS. CREATE HOPE. 1
Accomplishments Some of the major accomplishments in the last year: Funded over $1 million in research grants to 11 scientists Hosted 1st Scientific Summit Launched Raise the Cure campaign Introduced 1st pancreatic cancer legislation Sept 2008, reintroduced in Jan 2009 – The Pancreatic Cancer Research & Education Act (HR 745) Sent 18,144 messages to Congress Served 9,000 patients and families through PALS Expanded the only comprehensive patient educational library for pancreatic cancer in the world Hosted 6 symposia Hosted 321 volunteer-driven events across the country Significant increase in public visibility about pancreatic cancer; 640 media hits with reach in excess of 50 million Copyright © 2009 Pancreatic Cancer Action Network Comprehensive approach What makes our organization comprehensive? Funding research Demanding more aggressive federal research funding Providing patients and caregivers with reliable information to make informed decisions with their healthcare teams Helping individuals and communities work together to raise awareness and funds for pancreatic cancer Copyright © 2009 Pancreatic Cancer Action Network 2
Research Strategically funding initiatives in early detection, translational research, therapeutics, and increasing the number of investigators working in pancreatic cancer in order to expedite progress in the field. Copyright © 2009 Pancreatic Cancer Action Network Research FY08-09 Research Funding • 38 Scientists funded by June 2008 = $3.7 million Career Development Awards and Pilot Grants • Raise the Cure – launched in January 2008 A comprehensive strategy and action plan to put pancreatic cancer research on the fast track to finding a cure Private Funding: $25 million in next 3 years Federal Funding: $170 million through The Pancreatic Cancer Research & Education Act Copyright © 2009 Pancreatic Cancer Action Network 3
Research Grants: 2003 – 2008 Dartmouth College University of Washington Hanover, NH Seattle, WA Fred Hutchinson Cancer Research Center Dana Farber Cancer Institute University of Massachusetts Seattle, WA Boston, MA Medical School, Worcester, MA Massachusetts General Hospital Boston, MA Tufts University Boston, MA Mayo Clinic New York University State University of New York Rochester, MN New York, NY Buffalo, NY Columbia University New York, NY Northwestern University Chicago, IL University of Pennsylvania Philadelphia, PA University of California Johns Hopkins University San Francisco, CA Indiana University Baltimore, MD Indianapolis, IN University of Maryland, Baltimore County, MD Washington University Duke Medical Center St. Louis, MO Durham, NC University of California Los Angeles, CA University of Alabama Mayo Clinic Birmingham, AL Scottsdale, AZ Mayo Clinic Jacksonville, FL University of Florida, MD Anderson Cancer Center Gainesville, FL Houston, TX Career Development Award (23) Fellowship/Young Investigator Award (6) Pilot Grant (9) Note: 38 grants awarded to 25 institutions across the United States. Copyright © 2009 Pancreatic Cancer Action Network Research Connecting the Dots & Collaboration • Understand who is doing what • Push collaboration amongst researchers and institutions • Examine the needs of the community as a whole • Understand the patient’s experience • Clinical trials database Copyright © 2009 Pancreatic Cancer Action Network 4
Government Affairs Securing additional federal dollars for pancreatic cancer researchers across the country. Copyright © 2009 Pancreatic Cancer Action Network National Cancer Institute Funding Top Five Causes of Cancer Death NCI Funding for Top 5 Cancer Killers (listed in order of mortality rates) 1999 600 2000 2001 500 2002 400 Funding 2003 300 (in millions) 2004 200 2005 100 2006 0 2007 Lung Colon Breast PANC Prost 2008 Copyright © 2009 Pancreatic Cancer Action Network 5
Government Affairs • Federal funding for pancreatic cancer has increased by $69.5M since 1999; from $17.5M to $87M • Program growth: Opened Washington, DC office in 2006 Advocacy Days: April 2007, March 2008 and March 2009 – soon! Sent 18,000 messages to Members of Congress this year through our grassroots And now, RAISE THE CURE • The Pancreatic Cancer Research & Education Act= an investment of $170 million to carry out The Plan Copyright © 2009 Pancreatic Cancer Action Network Patient and Liaison Services (PALS) The premier source of quality, reliable information for people with pancreatic cancer, their friends and families, and health professionals. Copyright © 2009 Pancreatic Cancer Action Network 6
PALS case management disease/ mailed treatment within information 24 hours clinical trials search customized pancreatic cancer education packet specialized information PALS Associate first-time caller (patient, caregiver, friend, family member or health support professional) resources call back with more questions, get re-connected with original PALS Associate Copyright © 2009 Pancreatic Cancer Action Network Pancreatic cancer educational packet All materials reviewed by our Medical Advisory Board Booklets Informational sheets Newsletter Website Symposia Copyright © 2009 Pancreatic Cancer Action Network 7
Resources Clinical Trials Database Treatment Information Pancreatic cancer specialists Supportive Care: Diet and Nutrition, Side Effect Management Survivor and Caregiver Network Support Groups Financial Resources Copyright © 2009 Pancreatic Cancer Action Network PALS monthly contacts 2002-2009 FY 02-03 FY 03-04 FY 04-05 FY 05-06 Pancreatic Cancer Action Network FY 06-07 FY 07-08 FY 08-09 1200 Patient and Liaison Services (PALS) 1000 Number of contacts 800 600 400 200 0 Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr May Jun Month Copyright © 2009 Pancreatic Cancer Action Network 8
Referrals to PALS How do people learn about PALS? Health professionals (doctors, nurses, social workers, therapists) American Cancer Society National Cancer Institute (NCI) Cancer resource centers/libraries Internet Other cancer/health organizations Media (newspaper) PanCAN volunteers! Copyright © 2009 Pancreatic Cancer Action Network Copyright © 2009 Pancreatic Cancer Action Network 9
Community Outreach • Educating the community • Health professionals • Members of Congress • Media • Donors • General public • In FY 07-08 • Raised $3.6 Million in FY07-08 • Hosted 321 events in FY07-08 • Distributed 1476 healthcare professional packets • Highlighted in 640 online and print media articles with a reach in excess of 50 million • Increased public awareness and visibility Copyright © 2009 Pancreatic Cancer Action Network Community Outreach Atlanta Affiliate • Affiliate Coordinator – Liz Irvin: email@example.com • Events: PurpleStride Atlanta – November 15, 2008, over 700 participants • Comedy Night, Braves Game, Dinner and Auction, Bluegrass Music Festival. • http://www.pancan.org/Volunteer/ga/at/index.html Savannah Affiliate • Affiliate Coordinator- Jane Miller: firstname.lastname@example.org • Events: Walk on the Beach, Pancake Breakfast • Meetings: Last Tuesday of the month, Panera Bread in Savannah • http://www.pancan.org/Volunteer/ga/se/index.html Community Representative, Macon • Joann Bishop: email@example.com • Hosted Rush to Tackle Pancreatic Cancer in October 2008 • Distributes PALS Packets to health professionals • Attends Health Fairs Copyright © 2009 Pancreatic Cancer Action Network 10
www.pancan.org 877-272-6226 11